pwcf news – january

Marathon continued on page 12

PWCF NEWSIn this issue:

The Newsletter of Prader-Willi California Foundation AN AFFILIATE OF PWSA (USA)

Support PWCF’s15th Annual

www.PWCF.org/WalkingForPWS

PWCF Members Run the ASICS LA Marathon & LA Big 5K

A small and mighty group of amazing people comprised this year’s Team PWCF. Three ran 26 miles in the ASICS LA Marathon and 23 walked or ran 3.1 miles in the LA Big 5K. Together they raised over $15,000 to fund critical services provided by PWCF.

PWCF Marathon Team: Our elite Marathon runners, Kim Morgan (PWCF’s Vice President), Julia Rutledge, and Estavan Policarpo, really are awesome. Without glory or fame or even a photo to commemorate their Team,

they pushed themselves to their limits for the love of the cause (and, ok, maybe too for the love of running!). Kim ran for her daughter, Samantha; Julia ran for her son Maddox; and Estavan ran for his nephew Juan Gutierrez. Marathon Day was expected to reach record-breaking temperatures and so the Marathon moved up the runners’ start time almost a full hour so that runners could beat the heat as they ran from Dodger Stadium to Santa Monica. Even running in the heat with an hour less sleep, Kim achieved her goal to run the LA Marathon in 3 hours 45 minutes.

PWCF Marathon Cheer Squad: Estavan’s niece, Molly, came thiiiiis close to running in the Marathon for her brother until the Marathon Committee learned she’s only 16 and not eligible. But that didn’t stop her from participating. Nope! Instead, Molly rounded up her whole family – mom, dad, and brother Juan who has PWS – and all participated in PWCF’s Cheer Squad. Petra Ali-Martinez, director of this year’s Cheer Squad, brought her entire family as well and tasked her husband Munawwar to help set up PWCF’s booth. She tasked their son, Aiden who has PWS, with distributing hundreds of PWCF brochures and wristbands.

A true ambassador for PWS, Aiden singlehandedly raised public awareness of PWS with enthusiastic, determined focus. Erin Phillips was an awesome addition to this year’s Cheer Squad as she generously donated her time away from her family to add her own special brand of enthusiasm and gusto. The entire Squad poured their heart, soul (and sweat ‘cause it was a really hot day!) into creating an exciting, encouraging atmosphere for all of the Marathon runners.

PWCF 5K Team: Though few of our 5K participants would call themselves athletes, each is a true champion. The excitement began as the Team gathered at PWCF’s Booth in the 5K at Dodger Stadium. Everyone encouraged each other, helped each other pin on their bibs, and posed for photos. No one took themselves too seriously; all knew we were running – ok, walking – for a great cause, each for a loved one or dear friend. The LA Big 5K route is a beautiful and peaceful one, despite the thousands of participants. Whether one found it easy to raise the minimum $250 in sponsor donations, or whether it was simply easier to donate it, there was absolute consensus that participating on Team PWCF in the LA Big 5K was absolutely a worthwhile experience.

January - March 2015Volume 27, Number 1

Parent to Parent.............3

Medical Alert..................6

MiraLAX........................6

New PWS Clinic.............7

Nutrition Book................7

Enamel Erosion..............8

Family Fun Days...........9

Research......................10

My Research Experience............12

Paleo Diet....................13

Marathon/5k Donors...14

PWCF Calendar...........15

Board Corner................16

Team PWCF 5K Participants

Aiden and Erin

The Policarpo Family

Julie Casey and Renee Tarica

PWCF News, January - March 2015

PWS SuPPort GrouPS and ContaCtS

2015 OfficersPresident - Julie Casey

Vice President - Kim MorganTreasurer - Renee TaricaSecretary - Nisha Mehta

2015 Board of DirectorsWhitney Bras

Julie CaseyRoger Goatcher

June-Anne Gold, M.D.Diane Kavrell

Jackie LindstromTom McRaeNisha Mehta

Kimberlee MorganDaniela Rubin, Ph.D.

Jennifer Wolkensdorfer

Lisa Graziano, M.A. - Executive DirectorFran Moss, Editor, PWCF News

Katherine Crawford, Graphic Designer

514 North Prospect AvenueSuite 110 - Lower Level

Redondo Beach, CA 90277800-400-9994 (CA only)310-372-5053 (Phone)310-372-4329 (Fax)

Email: [email protected] address: www.PWCF.org

Facebook: www.facebook.com/pwcf1

Our Mission:Individuals with Prader-Willi syndrome should have the opportunity to pursue their hopes and dreams to the full extent of their talents and capabilities. The success of people with Prader-Willi syndrome depends greatly upon the knowledge and support of the community around them. The Prader-Willi California Foundation provides individuals with PWS, and their families and professionals with a state network of information, advocacy and support services.

PRADER-WILLICALIFORNIA FOUNDATION

A Full Life Without Limits

PWS Share & SuPPort GrouPS MeetinG Calendar 2015Southern CaliforniaBeach Cities Health District514 N. Prospect AvenueRedondo Room (Lower Level/Bottom Floor)Redondo Beach

Sunday, January 11Sunday, April 12Sunday, July 26Sunday, October 25Childcare available ONLY for children under age 12. RSVP to PWCF at 310-372-5053

Northern CaliforniaSupport for Families of Children with Disabilities1663 Mission Street, 7th FloorSan Francisco

May 2, September 19 Time: Check-in 10:15 a.m. Meeting 10:30 a.m. - 1:30 p.m.Childcare Available. RSVP to SFCD 415-920-5040 x 135

Northern California SF Bay Area (young child) Patti McRae 408-920-8003 [email protected] SF Bay Area (teen to adult) Michelle Donaldson 415-759-8740 [email protected] Diane Kavrell 530-753-5928 [email protected]

Central California (Teens & Adults with PWS) Paula Watney 559-299-8171 [email protected]

Southern California Los Angeles County Lisa Graziano 310-372-5053 [email protected] Julie Casey 818-843-7321 [email protected] Orange County Jenn Paige Casteel 949-735-0472 [email protected]

Inland Region Area San Bernardino County Ester Del Real 909-213-5992 [email protected]

Spanish Speaking Mercedes Hernandez (Adults with PWS) 619-822-5742 mercedes.hernandez711 @yahoo.comKilma Carillo (Infants/Children with PWS) 760-427-1100 [email protected] Veronica Garcia (Infants and Children with PWS) 760-357-8189 [email protected]

Online Support PWCF Online Information Sharing Group for Members. This online information sharing group is for PWCF members. To join the group, go to www.yahoogroups.com. In the search box under the heading “Join a Group” enter PWCFmembers. When the PWCFmembers group name appears, click and follow instructions to join.

PWCF Online Information Sharing Group for Professionals. This online information sharing group is for professionals working with individuals with Prader-Willi syndrome e.g., Regional Center caseworkers, residential staff persons, etc. To join the group, go to www.yahoogroups.com In the search box under the heading “Join a Group” enter PWSProfessionalsExchange. Click and follow instructions to join the PWSProfessionalsExchange group.

PWSA (USA) Online eSupport Groups www.pwsausa.org Click Enter. Click Support. for Families of Children Ages Birth-5 Years for Spanish-Speaking Families for Families of Children Ages 6-12 Years for Military Families for Families of Teens for PWS + Autistic Symptoms for Families of Adults for Persons with PWSfor Siblings for Grandparents

International PWS Organization, IPWSO offers information about PWS in other languages. Go to www.ipwso.org


Next Parent to Parent Question: “How do you carve out time and what do you do, either for yourself or for you and your spouse, to feel

rejuvenated, refreshed, re-energized and ready to react calmly to the next day’s stressors?”

Parent to Parent“Some of my extended family do not respect my decisions about food portions for my child with PWS.

What can I do to help them understand that my child’s needs are different?”

I normally educate them what Prader-Willi is and how proper dieting affect[s] the mortality of their lives. Hope this helps. William Go, father of Janelle, age 27

If you hand them one of the PWCF’s brochures that explains all about PWS, it may help. Most of my relatives don’t understand until I explain the various issues related to PWS, and there are many! Then, they just begin to have a vague idea what it’s like! And if they still don’t understand, ask them to look it up on the internet! After that, I don’t worry any further about them....My daughter’s own father never really understood and always blamed me and that’s when I decided I don’t owe anyone an explanation. Renee Lovern, mother of Kimberly, age 23

I have also had some difficulties with some family members. I actually bring his dish or bowl with me to their homes -- which is much smaller than their plates, and I insist on serving him. He’s 28 so I have had many years of this. Now they serve much healthier dishes and know I will serve him. It took a long time and it also took me telling them we wouldn’t come over if they served food he couldn’t eat and if they commented on my serving his portions. It got better. Molly Carter, mother of Danny

Whether it be family, extended family, care givers or even strangers, gaining respect from others will be a constant challenge due to the lack of understanding of your child’s needs. The primary source of respect must come from yourself. If you respect the decisions you have made and believe they are the best for your child then you do not need the respect of others in this regard. Know that you know your child best and that you are doing the best you can to keep them healthy and happy. If others really are concerned about the portions you are giving your child then direct them to the [PWCF]

web site so they can educate themselves about the dietary needs of a [child or adult with] PWS. If they do this then they will respect you for respecting the needs of your child. If others are not willing to do this then you can only go so far to attempt to explain that the metabolism of [children and adults with] PWS is much lower than most kids and more food than what your child needs will send the wrong signal of anticipation, causing more problems in the near and long terms. For some people, you may never be able to say enough for them to understand and this is why you need to rely on the respect of yourself and the decisions you make for your child. Mark L. Ojeda, father of Eric, age 31

Wow! Great topic. This is such a huge issue in my family as well. They see my son, Trevin, is skinny or normal weight so [they believe] we are mean, too extreme, and out of line to have him on a diet and they continue to give food and candy. No concern for our wishes or Trevin’s needs. It is so hard for others to see when your own family does not understand. We have invited them to events and PWS medical clinics but no luck. I think this is one of the hardest parts of PWS. They do not understand we as parents are doing 100 percent all we can to make sure our children live life to the fullest and longest. They cannot let go of small town traditions around food. Schools and church has been hard too as they are not willing to change or adapt as it is “how they have always done it”. It is even harder yet when it keeps getting put on us that they shouldn’t have to punish the other kids in school or church or even our own nieces and nephews with getting rid of candy and crap food. We should adjust. So I would love ideas and suggestions. So far we don’t fight it and cut calories at meals, which is not right but easier than the constant battle. We also avoid some activities since it is easier too. Can’t wait to read this part. Thanks for all you do. Crystal Redner, mother of Trevin, age 6

PWCF thanks Brittany Burns, Bill Spinelli, Kimberly Storr, and Elizabeth Greskovics for their help to prepare the 2014 Member Give Back program items for mailing

VolunteersPricelessare


Food tiP: SaMe riCe, loWer CalorieS

Submitted by Katherine Crawford

Rice is a great food staple - it goes with just about anything, it is easy to prepare, and it’s inexpensive... except for one thing. Just a single cup of cooked white rice is around 200 calories! This starchy food is quickly converted to sugar, and then to fat. But what if there was a way to have the same exact rice, but lower the calories?

An undergraduate and his mentor from the College of Chemical Sciences in Sri Lanka discovered that you can reduce the calories of a serving of rice by taking advantage of chemistry. “What we did is cook the rice as you normally do, but when the water is boiling, before adding the raw rice, we added coconut oil—about 3 percent of the weight of the rice you’re going to cook,” said Sudhair James, the undergraduate who presented this research. “After it was ready, we let it cool in the refrigerator for about 12 hours. That’s it.” This simple method reduced the calories between 10-15% in standard white rice (from 200 calories to 170-180 calories), with the potential of more calorie reduction in healthier types of rice—anywhere from 50-60%.

But how does it work? Not all starches are equal. Some starches are easily digestible, and others are not. By cooking the rice with a lipid such as coconut oil and letting it sit to cool overnight, the easily-digestible starches are converted into “good” starches that are harder for your body to break down into sugars. This conversion remains true even if you heat it up afterwards, which gives you lower-calorie rice, hot or cold.

GadGet tiP: traCkrSubmitted by Dolores Kirchner

A parent I met with let me know about this device…It’s a small tracking device so you can locate missing items—or persons—using your smart phone and a specific application. I’m sharing this since I know sometimes families would feel better with this type of security—especially if their child may be a wanderer.

TrackR has an app for both iPhone and your Android smartphone. There are various styles and types of TrackR’s. One style has an extra durable metal key loop that that hooks onto not just keys, but backpacks, purses, and more. TrackR Bravo is water proof. Keep track of things at the water park, by the pool, at the beach, or at the lake. There’s even a Distance Indicator that displays the distance between you and your item—or person—letting you know how far away they are. Cost of one TrackR is $24. Discounts for multiple devices. For more information or to order your Tracker, go to http://www.thetrackr.com/

We Got talentSubmitted by Patti McRae

Sixteen year old Duncan McRae is an actor who performs with Angels on Stage. In 2014 Duncan was awarded the Gypsy Robe for his commitment and spirit in the Angels on Stage production of the Little Mermaid. This year he is flying in the role of Grandpa Joe in the 2015 production of Willy Wonka Junior. Great job, Duncan!

Programs and performances for Angels on Stage are in Sunnyvale. For more information contact them at [email protected] or (888) 871-3331. www.angelsonstage.org


exeCutive direCtor’S ColuMn: by Lisa Graziano, M. A.

Executive Director’s Column continued on page 7

Civilizations around the world have been making resolutions at the start of the new year for over four thousand years.

Babylonians promised their gods at the start of each year that they would return borrowed objects and pay their debts. Gotta love a returned object and a paid off debt!

Ancient Romans began each year by giving gifts and making promises to their god Janus. An interesting god, Janus had two faces – one looking back on the past and the other looking forward toward the future. The Romans made resolutions to Janus in hopes he would look back on their prior year’s wrongdoings and forgive them, and bless them in the year ahead. Who doesn’t love forgiveness?

In the Medieval era, Knights took a vow each year to re-affirm their commitment to chivalry, the code of conduct to which they aspired. Ahhh, just the thought of good manners, graciousness, courtesy, and gallantry makes me quiver.

Today, the concept of the New Year’s Resolution is universal: to reflect upon the prior year and resolve to make improvements. What are the most popular top 10 New Year’s resolutions you ask? Wikipedia lists them as:

1. Improve physical well-being: eat healthier, lose weight, exercise more, eat better, drink less alcohol, quit smoking, stop biting nails, get rid of bad habits

2. Improve mental well-being: think positively, laugh more often, enjoy life

3. Improve finances: get out of debt, save money, make small investments

4. Improve career: perform better at current job, get a better job, establish own business

5. Improve education: improve grades, get a better education, learn something new (such as a foreign language or music), study more, read more books, improve talents

6. Improve self: become better organized, reduce stress, be less grumpy, manage time better, be more independent, watch less television, play fewer sitting-down video games

7. Take a trip8. Volunteer to help others, practice life skills, give to

charity, volunteer to work part-time for a charity organization

9. Get along better with people, improve social skills, enhance social intelligence

10. Make new friends

A 2007 study by Richard Wiseman, PhD showed that a whopping 88% of all New Year’s resolutions fail. Why? Because, he reported, goals are either too vague or not made “public” enough. If you haven’t yet publicly announced your specific New Year’s resolution, PWCF would like to help. Simply choose as your own, Resolution #8 above, commit to supporting your charity – PWCF – and as you will see as you read this edition of PWCF News, you will actually be accomplishing ten New Year’s resolutions this year!

1. Improve physical well-being: PWCF resolves to continue to share with members what we learn from PWS specialist clinicians and researchers about critical health issues that affect persons with PWS. This issue contains critical information about issues affecting elimination of the bowel.

2. Improve mental well-being: PWCF resolves to provide families with even more opportunities to connect, play, and laugh together. This year there are three Family Fun Days, one with the Oakland A’s, one with the Anaheim Angels, and a third with the Los Angeles Galaxy!

3. Improve finances: PWCF resolves to identify and pursue new funding sources so that we may continue to provide the critical supports and services that our families and professionals need. PWCF shall continue to manage members’ money judiciously, invest wisely, and spend sensibly.

4. Improve career: PWCF resolves to attract and retain highly qualified, bright, compassionate, enthusiastic Board members, staff, consultants, and volunteers.

5. Improve education: PWCF resolves to provide members with opportunities to learn even more by sharing information about the management of medical and therapeutic issues, and hosting seminars and training sessions on PWS behavior management and school advocacy strategies.

6. Improve self: PWCF resolves to never be grumpy with members, and to be even more proactive and organized. We will continue to support and promote current PWS research, encourage new research, and work to identify potential new researchers.

7. Take a trip: PWCF resolves to reach even wider areas of the state to provide training to schools, residential settings, and even in family homes.

8. Volunteer to help others: PWCF resolves that our Directors, Officers, staff, and volunteers will always be available to assist family and professional members and always ready to learn how we may provide even better support and services.


uSe oF Miralax (PeG) in Children With PWSAnn Scheimann, MD, MBA, Professor of Pediatrics, Division of Pediatric Gastroenterology & Nutrition at

Johns Hopkins Hospital, PWSA(USA) Clinical Advisory Board MemberJanalee Heinemann, MSW, PWSA (USA) Coordinator of Research & International Affairs

PWSa (uSa) iSSueS MediCal alert:ConStiPation in individualS With Prader-Willi SyndroMe

James Loker, M.D., Pediatric Cardilogist, Ann Scheimann, M.D., MBA, GastroenterologistPWSA (USA) Clinical Advisory Board Members

You may have read that the FDA has formally questioned the long term use of PEG (polyethylene glycol) in children. MiraLAX is a polyethylene glycol-containing drug. They do not know how much of PEG gets absorbed and what long term side effects it may have. This laxative has become the centerpiece for management of constipation in pediatrics, especially in children with chronic disorders including Prader-Willi syndrome.

There is potential for side effects with every medication. Mineral oil, lactulose, phosphate enemas, milk of magnesia -- all have potential side effects. Presumably, these medications are only used when they are needed and when the physician believes that the potential benefit outweighs the potential harm. The use of medications off-label and for prolonged periods of time is indispensable in pediatrics. Premature discontinuation of laxative use in children is often associated with symptom relapse and in the long term may be more harmful that prolonged use of laxatives.

PEG is one of the most studied medications ever in pediatric gastroenterology. We do not know of a molecule that has been studied so much to show efficacy in chronic constipation, has been studied in comparative studies, has been studied in fecal disimpaction, has been studied at very high doses as prep for colonoscopy, has been studied in different ages.

There are Cochrane reviews (Cochrane Review: Osmotic and stimulant laxatives for the management of childhood constipation. Gordon M, Naidoo K, Akobeng AK, Thomas AG. Evid Based Child Health. 2013 Jan;8(1):57-109) and the official position statement from the North American Society for Pediatric Gastroenterology released in January suggesting that there is justification to use PEG as first line treatment for childhood constipation and that this agent is deemed more effective than other agents and as safe as other agents.

The FDA should be applauded for awarding a study to evaluate in even more detail the safety and potential side effects of PEG, but until the results of the study are concluded, current advice for treatment of constipation in PWS remains the same – use MiraLAX to manage constipation.

Constipation is a common problem in individuals with Prder-Willi syndrome (PWS). It takes longer for food to move through the GI system in Prader-Willi syndrome.* This slower passage of food can lead to serious issues similar to the ones seen related to the stomach (see MEDICAL ALERT BOOKLET under “Severe Gastric Distress and Gastroparesis”).

Outpatient methods used to clear constipation in non-PWS patients may be ineffective due to poor fluid intake and hypotonia. Inpatient regimens frequently use large volumes of fluid which may cause problems. Reliance on these methods may lead to life-threatening conditions such as necrosis and perforation of the colon and subsequent sepsis. Due to decreased muscle tone and altered pain response, individuals with PWS may not have he same clinical exam that a non PWS patient would have. A heavier reliance on imaging may be necessary. Individuals with PWS may be at higher

risk for impaction. Rectal examination and enema may be required in addition to oral cleanout regimen. This may also be problematic in some leading to rectal picking.

Patients with PWS having constipation and receiving repeated regimens of oral PEG (polyethylene glycol) solutions for bowel cleansing should be monitored closely for abdominal distention and retention. Failure of standard constipation protocols to clear the stool in a timely manner, especially in the face of increasing abdominal distension, vomiting, decreased appetite, stoppage of food consumption and/or abdominal pain warrants surgical or GI consultation. Emergent surgical or colonoscopic intervention may be necessary.

*Kuhlmann, et al (2014) A descriptive study of colorectal function in adults with Prader-Willi Syndrome: high prevalence of constipation, BMC Gastroenterology, Apr 4; Vol 14: page 63


neW PWS CliniC to Serve adultS With PWS

PWSa PubliSheS uPdated nutrition book

exeCutive direCtor’S ColuMn, Continued

June-Anne Gold, M.D. from the Division of Genetic and Genomic Medicine at UC Irvine is in the process of initiating a new clinic that will focus on providing genetic evaluation and management for adults with Prader-Willi syndrome. It is anticipated that the clinic will be held approximately four times per year.

Dr. Gold has a long-standing interest in rare diseases and their natural history, and for many years she has had a passion for individuals with PWS and the challenges they and their families face. Dr. Gold is a member of the Board of Directors of both the Prader-Willi California Foundation and the International Prader-Willi Syndrome Organisation. She is involved in much PWS-related research and brings a wealth of information and care to her patients with PWS.

To learn more or be referred to the new PWS Clinic serving adults with PWS please call UCI’s Division of Gentics and Genomic Medicine at 714-456-5791.

PWCF announces an updated booklet, Nutrition Guidelines: Birth Through Adolescence.

This 16 page publication, which includes sections on calorie needs, what and how to feed your child, special events, and much more, is produced thanks to the volunteer efforts of PWCF Professional Member Melanie Silverman, M.S., RD, IBCIC, Gina Salvatori, RD, LDN (Director of Clinical Nutrition at The Children’s Institute), Lauren Martin, RD, LDN (also with The Children’s Institute) and Lisa Graziano, M.A. (PWCF’s Executive Director).

This booklet can be purchased from PWSA (USA) for $7.50 online at www.pwsausa.org/shop/publications or by calling 800-926-4797. This same team is putting the finishing touches on an updated book, Nutrition Guidelines: Adolescence-Adult with PWS. It is anticipated that it will be available for purchase in the next couple of months.

Executive Director’s Column continued from page 5

9. Get along better with people: PWCF resolves to reach out to other organizations to develop alliances, and expand our advocacy and awareness-raising capabilities.

10. Make new friends: PWCF resolves to welcome newly identified families and newly identified professionals and help them feel valued and appreciated.

On behalf of PWCF’s Officers, Board of Directors, Consultants, and Staff, I wish you the healthiest and happiest of new years.


enaMel eroSion and Severe tooth Wear in Children and adultS With Prader-Willi SyndroMe

by Barbara Dorn RN and Dr. Kimberly Wachter, DDS, with edits by Lisa Graziano

For years, it has been that individuals with Prader-Willi syndrome (PWS) have problems with saliva production resulting in dental caries/cavities, loss of enamel and severe tooth wear. Studies on “Salivary Flow and Oral Abnormalities in Prader-Willi Syndrome” as well as the study on “Severe Tooth Wear in Prader-Willi Syndrome: A Case-control Study” done by Saeves, Nordgarden, Espelid and Storhaug (2010 and 2012) from Olso, Norway support and validate these findings. The challenge now facing those with PWS is what to do to prevent and/or manage these problems. The following resource provides an overview of theses dental problems along with some possible approaches.

ENAMEL EROSION is the wearing down of the protective coating (enamel) of the teeth. When enamel wears down, microscopic channels in the tooth open up and become exposed. Most people with this problem complain of discomfort and pain. However, since many persons with PWS have an altered pain response they may not experience this sensation.

COMMON CAUSES• Abnormal salivation• Diet high in sugars and acid (Soft drinks, sport drinks, fruit

drinks, lemonade, coffee, tomatoes, strawberries. Citric acid, phosphoric acid, ascorbic acid are a few ingredients to watch for in foods.)

• Grinding of the surfaces of teeth• Health conditions including gastric reflex• Medications (aspirin, antihistamines and some vitamins)

PREVENTION• Drink water. Limit soft drinks, sport drinks, juices and coffee

in moderation. Dilute juices with water.• Brush with Biotene dry mouth toothpaste to improve saliva.

Biotene also contains fluoride, which is essential to dental health.

• Minimize swallowing toothpaste (too much fluoride can cause problems like enamel fluorosis. This condition can occur in children and causes defects in the enamel of the teeth. Ingesting large amounts of fluoride can be toxic and cause nausea, stomach pain and/or vomiting. It may not be quickly detected in person with PWS).

• Swish your mouth out with water or brush your teeth after drinking or eating items high in acid.

• Don’t sip on beverages for extended periods of time.• Do not drink or eat high acid beverages/food in the evening

after supper.• Use a straw to keep acids away from teeth.• Get regular dental checkups and cleanings (at least once every

6 months).• Talk to your dentist about daily fluoride mouthwash if there is

a history of cavities (use as a rinse; do not swallow). If needed to prevent swallowing, apply mouthwash with a Q-tip.

• Ask the dentist if sealants may be helpful in preventing enamel erosion and tooth decay.

TREATMENTOnce lost, enamel cannot be replaced. Treatment of tooth enamel loss depends on the underlying problem.

If a person with PWS is found to have a sudden loss of tooth enamel, testing should be done to determine if a medical condition is present. (May require special diet and medical intervention).

SEVERE TOOTH WEAR/GRINDING (also called bruxism) occurs most commonly at night. When teeth grinding occurs on a regular basis, teeth can be damaged and other oral complications can arise. Often seen in both children and adults with PWS.

CAUSES The exact causes are unknown, but it is often associated with stress and/or an abnormal bite.

TREATMENT• Mouth bite guard - best if individually fitted by a dentist.

Used most commonly while the person sleeps. May require incentive program for compliance.

• Avoid or cut back on foods and drinks that contain caffeine, such as colas, chocolate and coffee.

• Avoid alcohol. Grinding tends to intensify after alcohol consumption.

• Discourage chewing on pencils or pens or anything that is not food. Minimize chewing gum. It allows jaw muscles to get used to clenching and makes it more likely to grind teeth.

• Work with person with PWS to learn not to clench or grind his/her teeth. Have him/her practice relaxing jaw muscles.

• Try holding a warm washcloth against the cheek in front of the earlobe.

• Include plenty of water. Dehydration may be linked to teeth grinding.

Signs of Enamel Erosion:

• Translucency of the enamel

• Darkening or discoloration of the teeth

• Pain or cold sensitivity (may not always be reported in persons with PWS)


PWCF WelCoMeS PWS SPeCialiSt david a. StevenSon, M.d. to CaliFornia

PWCF is proud to introduce California’s newest Pediatrician and Medical Geneticist, David A. Stevenson, M.D.

Dr. Stevenson completed his residency in Pediatrics at the University of New Mexico and a 3 year fellowship in medical genetics at the University of Utah. He has been on faculty at the University of Utah for the past 10 years, and worked closely with the PWSA of Utah to establish their

PWS Clinic. Dr. Stevenson moved to California this year and is currently an Associate Professor in the Division of Medical Genetics at Stanford University.

As a medical geneticist, Dr. Stevenson is interested in genetic disorders and has an active medical genetics clinic at Stanford

where he sees patients. He has a specific interest in Prader-Willi syndrome and has been active in clinical research.

He has worked for many years with the Prader-Willi Syndrome Association (USA) primarily investigating the causes of morbidity. He is currently a member of the PWSA (USA) Scientific Advisory Board.

Dr. Stevenson is excited about his relocation to California and looks forward to seeing individuals with PWS in his clinic and getting to know members of the Prader-Willi California Foundation.

To learn more or to schedule an appointment with Dr. Stevenson at Stanford University, Lucile Packard Children’s Hospital call 650-723-6858.

Wherever you are PWCF haS a FaMily Fun day For you!

Family Fun at the Oakland A’s! A’s Battle Defending AL Champion Kansas City Royals

Sunday, June 28 at 1:00 p.m. at the Oakland ColiseumField Level $28/ticket

Pre-Game Visit with Stomper!

Family Fun at the Anaheim Angels!Angels v. Texas Rangers

Saturday, July 25 at 6:00 p.m. at Angels Stadium, AnaheimClub Loge Behind Third Base $28/ticket

Post Game Fireworks!

Family Fun at the LA Galaxy!Galaxy v. Portland

Sunday, October 18 at 4:00 p.m. at the StubHub Center, CarsonUpper Preferred Seating $29/ticketExciting Last Game of the Season!

Order your tickets today online at www.PWCF.org or call the PWCF Office at 310-372-5053


PatientS needed For reSearCh StudieS tarGetinG hyPerPhaGia

Beloranib StudyThis important phase 3 clinical trial sponsored by Zafgen, bestPWS, will help determine the effectiveness of a novel treatment for PWS called beloranib. In a phase 2 clinical trial completed earlier this year, beloranib showed a reduction of body fat and hyperphagia-related behaviors (the drive to eat) in a small group of PWS patients.

Participants: Adolescents and adults (12-65 years) with PWS, obese with a BMI of greater than or equal to 30, and, less than or equal to 60 kg/m2 (or greater than or equal to 95th percentile for ages 12-17). The study will enroll people with PWS living in a family home environment or group home less than half time with a consistent primary caregiver.

Study participants will be randomly assigned to receive beloranib or placebo. Study participation will involve twice weekly injections administered by visiting nurses at the participant’s home and approximately 8 visits to the study site over 7 months. Patients who complete the study will be eligible to enroll in an optional study extension where all patients will receive beloranib for another 6 months. Travel expenses for visits to the study site will be covered.

To learn more go to www.clinicaltrials.gov and type in “Zafgen Prader Willi” on the search bar.

To participate in the study contact the site closest to you:

Northern CA: UC Davis in SacramentoContact: Majid Mirmiran, MD, PhD 916-734-4790 [email protected]

Southern CA: UC San Diego, Rady Children’s Hospital Principal Investigator: Lynne Bird, MDContact: Rachel Winograd 858-966-8453 [email protected]

Call for

research

participants

Prader-Willi Oxytocin Study

The purpose of this study is to investigate if intranasal oxytocin will improve hyperphagia, social skills, and behaviors in subjects with PWS. Individuals with PWS have been found to have a deficit of oxytocin-producing neurons and decreased oxytocin receptor gene function, so this study will determine if oxytocin administration will improve some of the aspects of PWS that are particularly troublesome for children and their families (the insatiable appetite and social behaviors).

Participants: Children (ages 5-11 years) with a confirmed diagnosis of PWS, in nutritional phase 2b or 3, as determined by Dr. Kimonis, currently on growth hormone treatment and have been receiving growth hormone treatment for at least one year prior to screening date.

Study Location: University of California, Irvine Institute for Clinical and Translational Science. After a screening visit to qualify for the study, patients will be given either oxytocin or placebo and then after a 2-4 week wash-out period, will return for treatment with the alternative treatment.

Each treatment period will consist of 7-8 clinic visits. Measurement of sleep quality will be recorded from direct observation and questionnaires. There may be therapeutic effects for PWS by decreasing symptoms. There are potential side effects associated with this drug that will be discussed in detail with you before beginning the study. Compensation is $200 total.

Contact:Virginia Kimonis, M.D., Lead Researcher, Division of Genetics and Metabolism, Professor of Pediatrics, UCI. 949-824-0571 [email protected]

or Claudia Shambaugh, Study Coordinator949-824-0521 [email protected] See page 12 for a parent’s

experiences in this study


• Patients following this diet lose an average of 74% more weight

• Patients on the RYG diet are four times more likely to lose weight than those following other diets

“The Center for Prader-Willi Syndrome offers three levels of consultation services which are described in the attached brochure. They are confident that their program will benefit organizations that serve individuals with PWS, and can make a positive difference in the lives of individuals with PWS and their families.”

Please contact TCI’s The Center for Prader-Willi Syndrome directly to learn more about their Menu Consultation Services. Feel free to contact directly Gina Salvatori, RD, LDN, Director of Clinical Nutrition at The Children’s Institute, at 412-420-2159.

Menu ConSultation ServiCeS For reSidential ServiCe ProviderS

Motor Proficiency, Movement Planning, and Sensory Integration in PWS Participants: Children ages 4 to 7 years who are diagnosed with PWS.

Participants will be asked to make three visits. Visit 1 will last 1-2 hours and Visit 2 and 3 will last 3-4 hours. Testing will take place in the Movement Enhancement Laboratory in the Ruby Gerontology Center at CSUF.

Measurements include: a health screening, an intelligence test, and movement assessments. Participants will be given a package of toys worth $20 following each visit to CSUF. Parents/guardians will be reimbursed for mileage for the visits to CSUF and will be provided with free parking. For more information or to participate call or email pws.fullerton.edu or contact:

Dr. Daniela Rubin 657-278-4707 [email protected] or the Research Office 657-278-8737 [email protected]

Languages: English/Spanish

Energy Expenditure in Children with PWS While Walking on a Treadmill Participants: Children with and without PWS ages 7-12 years old. Must be able to walk continuously for 5 minutes.

Complete 1 site visit at CSU Fullerton lasting 2.5 hours. Children will receive a $20 gift card for their participation

For more information or to participate call or email Frank at [email protected] or Dr. Daniela Rubin at [email protected] or the Research Office at 657-278-3671

Languages: English/Spanish

PatientS needed For reSearCh StudieS on MoveMent and enerGy uSe in PWS

Call forresearchparticipants

The Center for Prader-Willi Syndrome at The Children’s Institute of Pittsburgh recently announced its new Menu

Consultation Services specially designed for care providers.

Writes The Center, “The dietitians at The Children’s Institute can help residential providers implement a formalized version of the Red, Yellow, Green (RYG) System for Weight Control. This diet, along with the structure of planned menus and visually appealing meals, has been proven to promote successful weight loss and management in patients who have gone through their PWS program. In fact:

• An average of 66% of families continue to follow the RYG diet 3 months post-discharge


My exPerienCe With the PWS beloranib Studyby Victoria Stover, Fallbrook, CA

We are enrolled in San Diego with Rachel and Dr. Lynne Bird. If anyone wants to know what it is like, it’s amazing!! They classified us as the guinea pigs, since we were first to start and willing to let them, figure things out and how they best can work with scheduling, breaks for eating snacks, etc. Going with the flow is easy with them.

Rachel is so attentive to our needs, works always to make sure we are feeling comfortable, and talks to you about everything going on, and just casual conversations. She only leaves our sides on our breaks for breakfast and lunch so she can continue to do the paperwork and blood spinning, etc. She helps Meagan stay calm

during blood draws, and we always have the same amazing guy, John, draw her blood (minus his one vacation day=small crying spell and nervousness) who greets her with a smile, calls her his buddy, and always jokes and laughs with her.

EKGs are done every visit, pre- and post dose, vitals, fasting and urine voided weights in same gowns every time, fasting blood work, and injection. We had a DEXA scan (bone density) first

visit, so that visit was a little bit longer than the rest so far.

We just started week #4. Some things make us think she is on it, and some make us think maybe not, but we know in week #7 we will definitely be on it.

The home health nurse, Susan, just the same: so caring and always making sure Meagan knows she is in charge and can freely discuss anything with her. She comes twice a week, and they have their time, laugh and joke. She has to come on holidays and does it with a huge smile on her face. Another perfect fit for PWS clinicals, as she has a distant family member who has PWS so she understands our lifestyle and always wants to know what worked for us so that she can help educate others about PWS.

We have a log pad that is simple to use, it alarms you if you need to do something, and you carry it with you to all study-related appointments and your home health nurse inputs as well as at her visits.

Compensation is a benefit as we have been in non-compensated studies, so I was shocked at the amount they are willing to give, for our time and energy, and driving the hour to the hospital.

I highly recommend if you can make it fit your schedule to be willing to partake in this study; this one is a much higher quality one then some of the ones we have done.

Our prayer now is that this will be a benefit to Meagan and all people with PWS. The time seems long on the day of the appointment but in the grand scheme of things, it’s so little compared to the life time of hunger pains.

Hope this helps any families that are on the fence about joining a study.

“Rachel is so attentive to our needs, works always to make sure we are feeling

comfortable, and talks to you about everything going on”

“The time seems long on the day of the appointment but in the grand scheme of

things, it’s so little compared to the life time of hunger pains. ”


hiGh Protein dietS and the PaleolithiC diet: CoMMentary by Daniela Rubin, Ph.D. and Jill Nowak Przygod R.D., CDE

In the last two decades, a great deal of interest has been placed on diets that provide a high percentage of caloric intake through protein. High protein diets are those that provide more than 3 g of protein per kg of body weight per day or about 30% of the total calories. In comparison,

current dietary guidelines for Americans recommend 0.8 g/kg/day or about 15% of total calories for protein intake. The benefits of these high protein diets include increased satiety, increased calories spent processing the food, and positive protein balance which is helpful for maintaining muscle mass in situations in which there is caloric deficiency.1

Recommendations suggest that protein consumption should be no more than 35% of total daily calories. At this moment there are no studies that have evaluated whether too much protein can be harmful in the long run to the kidneys except when people have pre-existing conditions in their kidneys.2 However, two common issues associated with high protein diets are dehydration and the high fat intake that is associated with these diets. Specifically, the large weight loss induced at the beginning when adopting a high protein diet is water loss.

The Paleolithic diet is included in this category of high protein diets. The key message this diet advertises is to restrict refined carbohydrates and dairy products and emphasize vegetables and lean proteins. There are also specific limitations as to which foods to consume and which not to. While the idea sounds interesting, there is no solid evidence that these diets should be recommended.

The small amount of research on this diet has been short-term (3 weeks to 3 months) clinical interventions in at-risk adult populations such as people with diabetes and/or the metabolic syndrome. The results of these studies suggest that this type of diet leads to reduction in fat mass and improvement of cholesterol and glucose levels. One study had 20 people enrolled to begin with and only 14 completed the diet during 3 weeks with results evaluated in only 6 participants.3 This study had no comparison group.3

A second study was done in 13 patients with diabetes during three months.4 In the latest published study, 14 adults in their mid fifties and with two of any of these conditions (high lipids, high sugar, high blood pressure, obesity) were enrolled in the Paleolithic diet during two weeks and compared to a control group.5 The poor design of such studies (very few people who did the diet, no comparison group, short duration) begs the question as to how

really helpful is this diet. One key reason why these trials are so short is the fact that it is very hard for people to adopt this diet strictly for a long time. One other concern is that trials testing this diet have been done in adults at risk for disease or with disease and we do not know how this diet works for growing children and adolescents.

Therefore, based on the limited amount of research evaluating the Paleolithic diet it seems premature to recommend that the Paleo diet should be adopted in people with Prader-Willi syndrome. Moreover, concerns regarding the nutrients provided by this diet lie on the limitation of dairy consumption, which can cause poor intake for calcium and vitamin D (both nutrients needed for bone health). Also, there is a limitation on the consumption of whole grains and legumes, thus limiting the intake of dietary fiber, B vitamins and iron. Also, compliance may be an issue because of the limitation of foods and perhaps cost.

However, most certainly the indications of a reduced intake of refined carbohydrates (sugary drinks, sweets, cookies, pastries, etc.) and increased intake of vegetables align well with healthy dietary practices for PWS as well as for the general population.

References:1. Jeukendrup, A., & Gleeson, M. (2010). Sport Nutrition: An Introduction to Energy Production and Performance. Champaign, IL: Human Kinetics. 2. Calvez, Poupin, Chesneau et al. (2012). Protein intake, calcium balance and health consequences. European Journal of Clinical Nutrition; 66:281-295.3. Osterdhal, Kocturk, Koocheck et al. (2008) Effects of a short-term intervention with a paleolithic diet in healthy volunteers. Eur J Clin Nutr ;62(5):682-5.4. Jönsson, Grandfelt, Ahrén et al. (2009). Beneficial effects of a Paleolithic diet on cardiovascular risk factors in type 2 diabetes: a randomized cross-over pilot study. Cardiovasc Diabetol. 16;8:35.5. Boers, Muskiet, Berkeelar et al. (2014) Favourable effects of consuming a Palaeolithic-type diet on characteristics of the metabolic syndrome: a randomized controlled pilot-study. Lipids Health Dis;13:160.

“based on the limited amount of research evaluating the Paleolithic diet it seems

premature to recommend that the Paleo diet should be adopted

in people with Prader-Willi syndrome”


aSiCS la Marathon and la biG 5k donorS!

ASICS LA Marathon Runners & SupportersKim Morgan and her donors running in honor of Samantha Morgan

Elyce Larsen • Ariane & Ron Natale • Tom & Diane • Elyce Larsen Chris & Michelle Johnson • Diane Ruane • Christopher Johnson

Ryan Welker • John & Laurie Friend • The Acedo Family The Brown/Prinz Family • Roxana Cousens-Acedo

Christopher Brown • Cynthia Pollock • Steve & Kathy Hitt Deirdre & Howard • Anonymous • The Figlin Family

The Gresslers • Mufaddal Bootwala • Lynn Abess • Dave Bushnell Karen Reckamp • Monica Hall-Gressler • Pat & Jo Ann Wheatley

Brad Welker • William Welker • Chris WelkerDr. Sumanta & Reena Pal • Jill Welker • Michelle Donaldson

Estavan Policarpo and his donors running in honor of Juan Gutierrez

Maggie, Molly & Juan • Estevan Policarpo • Marcos G.Grandma Maurilia & Carmen • Amy & Diana

Gaudenicia Policarpo • Manuel F. • Anonymous • Yesenia Fabian

Julia Rutledge and her donors running in honor of Maddox Rutledge

April Bennett • Cynthia Glasser • Shelley Dunn • Anonymous Verla Bennett • Heather • Craig • Darcie Abrams • Aleesha

Anonymous • Angela Chacez • John L. Domeier • Brenda Earley Erin Vaillancourt and New Light Therapy • Debbie Flory

Jason Goodwin • Alan Hill • Mike Holland • Katherine JamesEunice Lee • Liberty Prestoza • Edward Mann • Jonathan Mann

Evonne Maokhamphiou • Roberta & Ed Parsons • Marissa Rangel The Reilly Family • Rick & Brandi • Michael Rutledge

A. Smith • The Barnetts • The Wasson & Moreno Family Amber & Brian Thomas

LA Big 5K Runners & SupportersBernard, Hasmukh, Kevin & Lauren Amarasekera

and their donors running in honor of Lauren AmarasekeraDavid Amarasekera • Tania Ajam • Vijay Gajjar

Hasmukh Amarasekera

Whitney Bras and her donors running in honor of Ryan RamirezThe Collins Family • Michelle Doig • Sarah Williams

The Wendell Family • Lucianna Corbitt • Anonymous • Laura Curtis The Meurs Family • Jenna Schumacher • The McCafferty FamilyKevin & Jenn Erickson • Kaitlyn & Susan Olson • Andrea Bras

Emma Hamlin • Diane Paris • Nate & Haley • The KnutsonsKasen Bras • Amy Perkins • The Harris Family

Julie Casey and her donors running in honor of Ryan CaseyColleen Benn • Marie-Claire Leon• The Friedmans

Brian & Carol Bark • John Storr • Dan Nowicki • AnonymousErnie Mercer • Dave Miller • Patricia Casey • Michelle Donaldson Joseph Parra • The Ryan Family • Keith Kincaid • Robert Reifeiss

Julie Casey • Cynthia Del Rosario

Gail, Rodney, & Kiran Dong and their donors running in honor of Kiran Dong

Dena Gittisarn • Mark Baxter • Maynadine Avelino • Maria Ngugi Olivia Lisa • Kevin Ho • Irwin Avelino • Candice Tejamo

Elvira Dong • Gail & Rodney Dong

Laurie Friend running in honor of Ryan Casey

Rochelle Ginsburg & Jeffrey Brown and their donors running in honor of Ryan Casey

Anastasia Wardzinski • Shelly Ginsburg • Bryan Mandel • Corey Blake Elizabeth Green • Sam Kubernick • Sam Kubernick• Cathy Lee-Shin Kimberley Carlson • Bryan Mandel • Bryan Mandel • Larry Brown

Alan Ginsburg • Christine Rodriguez • Linda Zsevc • Marilyn Poliskin Len Wishnak • Chuck Sawyer • Trisha Oksner • Wendy Ginsburg

Debra Eckerling • Julie Casey

Cameron & Lisa Graziano and their donors running in honor of Cameron Graziano

Chris Irving • The Bohney Family • The Jacoby Family The Graziano–Wachtell Family: Bob, Wendy, Matt, Jameson, Brian,

Bradley and Davis • Margaret & Bill Spinelli • Carolyn Meyer Donn Moll • Mary & Pat Williams • Philip Lee, M.D.

Christi Nguyen & Daddy • The Anderson Family

GiGi & Elizabeth Greskovics and their donors running in honor of GiGi Greskovics

The Rhymes Family • Gloria Whitman • The Bakos Family The Honeys • Kathryn Ibarra • The Schloss Family • Kerry & Heath

Doug & Julie Davidge • The Alonso Family • Alana Hoffman Sue & Stan Katz • Ann Meyers • Ann & Monica • Laure Cox

David, Lisa, Ben & Sara Pierce • Lulu & Ryan Cox • Cheryl Egers Perry • Hadley & Gretchen Cox • Bill & Helene Sedwick

The Rehnborgs • Kim Martin • Eve MacHale • The McHale Family Elizabeth Horbay • The Collins Family • The Olsen Family Bobbie Ferraro • Lisa Coppedge • Sara Flynn • Sally Flynn

Patti Anches • Shelly • David Sedwick • David & Marty • Kate OleaMichele Maher • The Belardis • Andree Scott & Mia Friedman

The Viklund Family • Mike, Olivia & G • Keyren Cotter

Ashley Heath running in honor of Joe HarkinAshley Heath

Cyndie Kelly running in honor of Samantha Morgan

Jennifer & James Meade and their donors running in memory of Scarlett Meade

James Meade • Jennifer Meade • Steven Rosenthal • Maria Estrada Brian Reed • Miranda Mirsec • Claudia Cardenas • Rosa de Luna Lee Ann Rosenblum• Neil Soskin• Jean Bobier • Sarah Frazier

Stuart Mercer • Elizabeth Staley • Jeanne & Roger Staley • Peg Schnelt Anonymous • Francine Brown • Diana Whitt • Kim Lenoach

Etan Orgel • Mary Nell Meyer • John VanMarter • Mary Helen Schnelt Louise Schwindeler • Jina McClintic • Loretta Felix • Lisa Hinning

Patricia Estrada • David Haub • Liliana Granda • Marian Perkins Hilary Whitrock • Julia Craven • Marcos & Patricia Estrada

Dr. Jeff Gritchen & family • Elena & David Haub • Lisa HiningJody & Duane Hogge • Andrew Levine • J. Meade • Mark Meade

Mary & George Meyer • Jina & Shane McClintic • Mary Miller Miranda Mirsec • Brian & Mary Jo Reed • Stacie Ritchie

James Thorpe • Joseph A. & Mary Helen Schnelt Louise & Marty Schwindeler • John L. Vanmarter

Gregory Williams (Honda North America) • Warren K. Zahler

Marathon/5K Donors continued on page 15

PWCF expresses its profound appreciation to each and every one of our participants and to each and every one of our donors. Your contributions will directly assist and support someone with Prader-Willi syndrome. A sincere thank you to everyone who participated!


Renee Tarica & Lianne Noddle and their donors running in memory of Yvette Tarica

Jeanine Milner • Robin & Michael Targon • Blair Feil • Sherri Cirac Melissa Plotsky • Melinda Rubin • Harvey Noddle • Rina Hasson

Jill Nevins • Monica Columbia • Joseph Liberman • Ashlee Berard Paula Chaskes • Brenda Gillis • Pamela Mirvis • Rachelle & Ariel Belkin

Suzi & Barry Ross • Jacki & John Gartman • Michael WeissLaurie Chapman • Jack Gross • Elie Soriano • Jacques Soriano

The Soriano Family • Jan Eisner • Laura & Keith Miller • Wendy JaffeLisa, TJ & Cameron Graziano • Stella & Yitz Dekel Pamela Kreitenberg • Leslie Brown • Nicole Gelbard

Terri Tessier • Monica Fratkin • Hanan Haskell • Lianne Noddle Rosa Basson • Cathy Fenchel • Dolores & Valerie Horn

The Resnick Family • The Gaines Family • The Feil Family Sherri Cirac • Melissa & Don Plotsky • Melinda & Greg Rubin Sheila & Harvey Noddle • The Chaskes Family • Janey Eisner

Allison & Michael Weiss • Linda & Jack • Anonymous The Aronoff Family • The Gelbard Family • The Tessier Family

The Fratkin Family • The Haskell Family • Bunny Bloch Vivian & Raymond Edelman • Geraldine Maimin

Mercedes Hernandez & Javier Rivera and their donors running in honor of Maribel Rivera

Javier Rivera

Mari Ota & Lindsey Wang and their donors

running in honor of Lindsey WangMari & Tony Wang

Susan Requa and her donorsSarah et Christophe (UUC friends of Krysta) • Tony Close

Krysta • Anonymous • Susan Requa

Chris Welker running in honor of Samantha Morgan

Melissa Williams raised funds in honor of Ryan RamirezRuth Ann Williams • Melissa Williams

PWCF eventS Calendar 2015Date Day Event LocationJanuary 11 Sunday LA County Support Group Meeting Redondo Beach, PWCF OfficeJanuary 23-25 Fri - Sun Board Meeting Desert Springs ResortMarch 10 Tuesday Board Meeting Evening - Phone MeetingMarch 14 Saturday LA Big 5K Dodger StadiumMarch 15 Sunday ASICS LA Marathon Los AngelesApril 11 Saturday Northern CA Walk San FranciscoApril 12 Sunday LA County Support Group Meeting Redondo Beach, PWCF OfficeApril 18 Saturday Central CA Walk Dry Creek ParkApril 26 Sunday Southern CA Walk Griffith ParkMay 2 Saturday Northern CA Support Group Meeting San FranciscoMay 14 Thursday Behavior Management Training Redondo Beach, PWCF Office May 16 Saturday Board Meeting Redondo Beach, PWCF OfficeJune 18-23 Thu - Tues PWS Camp Camp HarmonJune 28 Sunday Family Day at the Oakland A’s Oakland ColiseumJuly 14 Tuesday Board Meeting Evening - Phone MeetingJuly 25 Saturday Family Day at the Anaheim Angels AnaheimJuly 26 Sunday LA County Support Group Meeting Redondo Beach, PWCF OfficeAugust 1 Saturday IEP Advocacy Training Redondo Beach, PWCF OfficeSeptember 12 Saturday Board Meeting Redondo Beach, PWCF OfficeSeptember 19 Saturday Northern CA Support Group Meeting San FranciscoOctober 3 Saturday Behavior Management Training Redondo Beach, PWCF Office October 4 Sunday Brass Golf Tournament Black Gold Golf Club, Yorba LindaOctober 18 Sunday Family Day at the LA Galaxy StubHub CenterOctober 25 Sunday LA County Support Group Meeting Redondo Beach, PWCF OfficeNovember 1-7 Sun-Sat Obesity Week Los AngelesNovember 3-7 Tues-Sat PWSA Meetings/Conference Orlando, FLNovember 13 Friday Board Meeting So. CA HotelNovember 14 Saturday PWCF Annual State Conference So. CA Hotel


The Board met from Saturday January 24th through 26th at the Desert Princess Hotel in Palm Springs. Members in attendance were Julie Casey, Tom McRae, Whitney Bras, Roger Goatcher, Daniela Rubin, Ph.D., Diane Kavrell, Renee Tarica and Nisha Mehta. Also present were Lisa Graziano (Executive Director), Gloria Burns (Office Manager), Sheila Umeda (Social Worker Consultant) and Jill Nowak (Dietician Consultant).

The following reports were presented and reviewed prior to the meeting and were approved into the record at the meeting: Executive Committee Report, Executive Director’s Report, Finance Committee Report, Social Media Report, Public Awareness Committee Report, Program Committee Report, and the minutes from the November meeting.

Highlights of the meeting include:

• Although we are currently financially secure we are always looking for future donations to ensure our position and increase services to our members either through grants or Corporate Sponsorships. The Board discussed researching the feasibility of hiring a Fund Development Manager whose sole purpose would be to identify and plan future revenue sources. Also discussed was the feasibility of hiring a public relations consulting firm to help us raise awareness of PWS.

• The Board began discussing ideas for the 2015 Member Give Back program, and also re-confirmed the desire to continue

the Member Outreach program by calling members in March.

• Working on various member activities: Oakland A’s event, Anaheim Angels, and LA Galaxy; dates to be finalized soon. Also another fun event both being held in Northern and Southern California will be an afternoon at “We Rock the Spectrum”. It’s a very cool indoor play area that has something for everyone from ages 1 and up. Watch the newsletter, our website, Facebook & Twitter for details on all of these events as they are finalized.

• Annual GEM (General Education Meeting) has been renamed to Annual State Conference.

• We will again host IEP and Behavior workshops; one of each to be held in both Northern and Southern California.

• Two consultants Sheila Umeda (Social Worker) and Kim Nowak (Dietician) both told us about the help they are giving to our families. Sheila is especially helpful with insurance issues.

• Voting to grant IPWSO $500 toward the development of their Prader-Willi Syndrome mobile app for the iPhone (currently only available for android platforms) contingent on the app actually being developed.

• The Board also spent significant time discussing the budget and finalizing the strategic plan.

board CornerSummary of Board of Directors Meeting on January 24-25, 2015

Submitted by Diane Kavrell

We Remember Richard Sadaichi Sakurai

September 30, 1966 – December 7, 2014

Richard Sakurai, known to all who loved him as “Ricky,” loved life. He loved his friends, and he absolutely loved his family.

He and his mother, Rose, loved to travel. They traveled to Japan a number of times, and often took Ricky’s nephews and other family members with them on their adventures.

Family was very important to Ricky. Also important were his friends.

Ricky enjoyed spending time at the New Day Program in Montebello where he was a valued member of their group.

Ricky passed away in the loving embrace of his mother who was devoted to her son. He will be missed by many and loved forever by all who knew him.


tribute to SCarlett leiGh Meadeby Jennifer Meade

Our beautiful Scarlett was born on January 24, 2014. She provided many surprises through her short life including the day she was born. My 39th birthday was the day before. I was 7 months pregnant. At 10PM that night my

water unexpectedly broke and Scarlett was born 3 hours later. With the premature birth, Scarlett was whisked off to the NICU for immediate treatment.

Almost immediately, the doctors expressed concern that Scarlett was very sleepy and hypotonic. I thought she was just traumatized from being born 2 months early. Scarlett was tested for a slew of potential disorders and a few weeks later, Scarlett was diagnosed with the UPD version of Prader-Willi syndrome. Her father and I were devastated. What we read on the Internet regarding Prader-Willi was horrifying. Luckily we found the Prader-Willi national organization and ordered the Package of Hope. As we became more educated on the disorder we felt more confident that we could handle it. Scarlett didn’t seem like a “special needs” baby, she was just Scarlett.

We did everything we could to make sure Scarlett had all the early intervention tools that she needed. We organized all of her specialist referrals through her pediatrician. She was set up for regular appointments with a physical therapist, occupational therapist, ophthalmologist, gastroenterologist and endocrinologist. Scarlett was making great strides in her development. She got off her feeding tube at 5 months. She started growth hormones at 7 months. She was an incredibly easy going baby who hardly ever cried. Keeping up with all of the intervention therapies was a lot of work for her father and me, but it became a new normal for us. We were in love with our baby Scarlett and everything we did for her was worth it.

Scarlett was never sick until she was about 9 months old. It started with 2 weeks of diarrhea, which the doctors initially thought was from a type of baby food that was introduced. Then she got what seemed to be a cold but turned into something more when she became feverish and just wanted to sleep all day. We took Scarlett to the emergency room and she was diagnosed with Para influenza Type IV. She recovered a week later and we took her home.

Unfortunately a few days later we had to take her back since she became sick again. This time the diagnosis was worse – ALL T-Cell Leukemia. Scarlett had to go on chemotherapy immediately in the hopes of eradicating the cancer. Just like with having Prader-Willi, we were fully prepared to work with Scarlett to get through this

crisis, which we thought would just be a temporary setback. We reached out through PWSA(USA) and PWCF to connect Prader-Willi experts with Scarlett’s oncology team. Scarlett took the chemotherapy treatments in stride. She never complained and was still a happy baby for the first few weeks. Unfortunately, she contracted another respiratory virus that her little body could not fight off because the chemotherapy and Leukemia wiped out her immune system. Scarlett had to go on a respirator in order to get enough oxygen to her infected lungs.

The doctors did not think Scarlett was going to make it on Christmas Eve, but she continued to hold on for an additional three days. Because she was such a fighter, her big sister was able to have a Christmas morning opening gifts from Santa. We had the love and support of family and friends who stepped up and offered help in our time of need. So many people prayed for her. Unfortunately we did not get our miracle. On December 27th, Scarlett’s little body shut down and she died peacefully in our arms.

We had 11 months and 3 days as Scarlett’s parents. While we are grateful for that time with her, we are also sad for all the things we will miss from not seeing her grow up. We were ready to deal with all of the difficulties that Prader-Willi would bring later on. We had ideas about diet plans, teaching her yoga for exercise, starting speech therapy, going to a regular school, and the list goes on.

Scarlett’s life was full of only love and goodness. We did not see her as special needs. To us she was just special. We will miss her every single day for the rest of our lives. We are grateful for the support we received from the Prader-Willi community throughout Scarlett’s short life.

After battling leukemia, Scarlett passed peacefully on December 27 in the arms of her parents. Her memorial service was held on January 9 at All Souls Mortuary Chapel. To send the family a message, go to www.allsoulsmortuary.com or email PWCF at [email protected] .

Jennifer and James ran on Team PWCF in memory of Scarlett at the LA Big 5K on March 14. Their determination raised awareness of PWS, their generosity raised funds for PWCF, and their courage inspires all who have the honor to know them.


thankS to our ShininG StarS!

E Dear PWCF: Thanks for your past information and support. Big win today for our IEP meeting... got 1:1 [aide support] till she is in 2nd grade…presently in Kindergarten. I was coached by all your “lingo” and all the info from PWCF. Our hearts are thankful. We stood our ground and won today. Yeah for the Home Team. I will help others in the future to achieve as well. Great New Year! Love, Rhonda Faust of Angela PWS, turning 6 on March 14. Always Thankful!!!

E Dear PWCF: Thank you for the Healthy Life materials I just received from your organization. How clever and how useful! Up here at Far Northern we are working on a number of small projects to increase the health status of those we serve. Your materials are very useful for everyone as well as the population you focus on. Thank you so much for the resources.

One of the projects we are working on are small food banks for people in supported and independent living. For a small amount a money ($10.00) a month, a bag of food is delivered either weekly or bi-weekly to your home with recipes and instructions on how to cook the food. It also creates jobs for our clients who work the food bank. I would like to share this material with the food banks and would like to know if we could have permission to copy the two brochures for the purpose of helping people understand nutrition facts labels and nutrition and physical activity guidelines. Thank you again for the gifts. Laura Larson, Executive Director, Far Northern Regional Center

E Dear PWCF: I saved part of my allowance money since 6th grade (I am in 8th grade) to help support you. There was a boy in my classes K-5 who had Prader-Willi. Olivia Maturama

E Dear PWCF: …I’m excited about all of the new experiments they are doing with the “new” drug. I’m so thankful for the CA Association [PWCF] as they have been so into getting PWS out into the news and information that was not available 30 years ago! Keep up the great work!! Thanks and kind regards, Pat Noland

We Get Mail

Thanks to our Shining Star donors, we have raised over $35,000 towards PWCF’s mission as we begin 2015! This support helps families all across the state of California. We’re working together to improve the lives of those affected by PWS. Your tax-deductible donations will help us do even more.

Since 1979 PWCF has been the only organization in California to solely focus on serving persons with PWS, their families, and the professionals who serve them.

PWCF provides caring support to newly diagnosed parents; provides critical advocacy services to families; brings invaluable education and training to families and professionals including residential providers, teachers, and Regional Center staff; funds PWS Multidisciplinary Clinics; raises the public’s awareness of PWS; and helps researchers progress PWS research.

Now, we begin 2015 with all the hope and promise that a new year brings. Thanks to everyone who supports PWCF!


Renewed Auxiliary MembersLynnette CollinsLaura Cornish

Renewed Extended Family MembersDolores AlbaughLisa Ann BonkTerri CanalesCarina ChaijSally & Chet CollomMary CulverLaura & Ray EsauMolly FullerWendy & Bob GrazianoPat GreySandra HansenJo & Floyd HatcherAnna Maria KanaukaSharri & George MarichBetty McBroomeLinda McGeeKathleen MinorLynn & Chuck MorrowLianne & David NoddleKathy & Ralph PaigeJudy SchlaferMargaret & Bill SpinelliVilly VitroRon & Pat VogrinCeleste & Tom Von Der AheMary & Pat Williams

Renewed Family Friend MembersPatrick MaxonJanice Nakagawa & Steve GroganNancy & John JenkinsRonnie Raffaniello Tyna & Ray Triggs

Renewed Professional MembersMary Lane Carlson, Ed.D, MPH, RD, CDE

Jowella Chico Jowella Chico Care Home

Janet Foos Redwood Coast Regional Center

Larry Landauer Executive Director, Regional Center of Orange County

Ellen Lewis Southern CA Integrated Health & Living Project

Paul Jorgenson Ashbury Images

Santi J. Rogers Executive Director, Department of Developmental Services

Daniela Rubin, Ph.D. CSU Fullerton

James Shorter Executive Director, Golden Gate Regional Center

Melanie Silverman, MS, RD, IBCLC

Melinda Sullivan Executive Director, Frank D. Lanterman Regional Center

Your support keeps PWCF strong so that we may provide vitally needed programs and services to persons with PWS, families, and the professionals who serve them.

Renew your membership today!

MeMber aCtivity

We GooFed!

Corrected Date of Southern California’s

Walking for Prader-Willi Syndrome event

Last issue listed the Southern California WALK event incorrectly.

The correct date for this year’s So CAL event is Sunday, April 26.

We are fortunate and grateful that the majority of families renew their membership each year. In the interest of space, therefore, we list only new Individual and Family Members. New and renewing Extended Family, Family Friends, and Professional Members are listed.

Prader-Willi California Foundation is grateful to each of our donors for helping us provide quality supports and services to individuals with Prader-Willi syndrome and their families. Thank you!

We work hard to recognize all donors who wish to be recognized. If you don’t see your name listed, please accept our sincere apologies and allow us the opportunity to include your name in the next issue by contacting us at 310.372.5053 or [email protected]

Prader-Willi California Foundation is a non-profit 501(c)(3) public charity. Established in 1979, PWCF is the only organization dedicated exclusively to serving the needs of Californians impacted by Prader-Willi syndrome. PWCF is comprised of parents, extended family, friends, dedicated professionals and care providers, and is supported solely by dues and donations.

Prader-Willi California Foundation proudly maintains an affiliation with the national Prader-Willi Syndrome Association (USA)

DONATIONSJanuary - March 2015

Shining Star Donations Sirius ($1,000 or more)Stephen Coffey Mark & Susan LewisDennis Martino in honor of Lilli MooreThe Nararo FoundationJacqueline Smalley Gabriel Snodgrass in loving memory of Julianna Michelle Snodgrass in honor of Veronica Renee Bosse

Canopus ($500 - $999)Bonnie Gowing in honor of Trevor RyanAsh Gujral in memory of Christopher ClarkeTim & Karen JobeSuzanne Privette in honor of Samantha Morgan (monthly donation)

Alpha Centauri ($250 - $499)Rudy & Catherine Alvarez in memory of Daniel John AlvarezAnonymousMary Culver in honor of Allison MahanCandelaria & Ignacio Garcia in honor of Ignacio Martinez, Jr.Phillip Lee, M.D. in honor of Cameron GrazianoJudy & Bob Morgan in honor of Samantha MorganIvette Ramos in honor of Victor RamosMark & Linda Ryan in honor of Trevor RyanRose M. Sakurai in memory of Richard Sakurai

Arcturus ($100 - $249)Lisa Ann Bonk in honor of Nolan Carl BonkMichele Boucher & Scott Rosenthal in honor of Trevor RyanRima & Robert Buch in honor of Elle MartiniakLorraine & Marvin Buhai in honor of Amanda WissmannIda Dacus in memory of Curt MartensMolly Carter in honor of Dan CarterGayle Dax-ConroyKathleen Dignan in honor of Timothy DignanEaster Seals Central California in honor of PWS Camp at Camp HarmonWanda & Steve FaivreLisa & T.J. Graziano in honor of Cameron GrazianoGitta Meyer-Green & Lawrence Green in honor of Cameron GrazianoThe Greskovics Family Brian P. Hughes in honor of Ryan Casey

Kelly & Hurt Jaeger in honor of Brooke MarichThe Kairey Family in honor of Amanda WissmannJohn Koerber in honor of Alison M. KoerberElias & Miriam Liberman in memory of Yvette TaricaKathleen & Ralph Paige in honor of Nicolas PaigeCatherine Soden in honor of Lillian MooreKathy & Kristina Swesey in honor of Emily VarniLiang Yu TaiMichael Tomelloso

Vega ($1 - $99)Kyra Allen in honor of Faith AllenArstein-Kerslake FamilyMarilyn & John Bintz in memory of Page BintzIra BloomMichelle BosseBev & Bud BushTerri Canales in honor of Taylor Skye CanalesThelma & Thomas Davidson in honor of Ian DavidsonIra FennessyBarbara & Larry Gunter in honor of Brandi ShermanLinda HamiltonSusan HillAlex HuckMaria & Ken Knox in honor of Jamilet Knox Linda McGeeLucy Jao Ong & Bie Chuan in honor of Audrey OngKaren Reynolds in honor of Ryan Olson RamirezDana Rottici & Family in honor of Julia LindstromLeanna Russell in honor of Teresa SharpenJudy Schlafer in honor of Timothy SchlaferRenee & Henry TaricaPlonneke & Martin Thoolen

Magnanimous General DonationsAmy & Paul WissmannMari O’Neill in honor of Olive Baach

General DonationsAdobe matching donations received from Tom & Patti McRae Dolores AlbaughKyra AllenCatherine and Rudy AlvarezBenevity Community Impact FundDaos Boonma in honor Ryan Casey on Dan Casey’s birthdayBP Fabric of America FundMary & Holger BrachtTerri CanalesMolly Carter

Liang Yu Tai & John Cheng Chevron Matching Employee FundsComcast Corporation at the request of Michael DenataleAnn CaveMichelle & Kevin DonaldsonEric ElliottLaura & Ray EsauFidelity Charitable Gift FundStacy GardenLisa & T.J. GrazianoPat GreyRobin GreyKroger Grocery Barbara & Larry GunterLoni & Steve Hamilton in honor of Michael Hamilton’s 40th birthdaySusan & Daniel HedstromTrudy & Randy HermansHeather HesselOlivia Maturana in honor of Oscar HillJean & Lowell HobrockKelly JaegerNancy & John JenkinsAnna Maria KanaukaMary & Alan KisakaMargot & Gerry LawrenceHope May-LiddiardJacki LindstromPatti & Tom McRae (monthly donation)Kathleen MinorRandeep & Kulvir MehrokeGail MorganMichael MorganMelinda MorrowChrista MurphyMasani & Hanif Nassor-CovingtonFran NicholsonBetty OlsonLinda & Mark RyanMargaret O’SullivanKathy & Ralph PaigeAmanda A. SchriewerJanice & John ShimminRenee & Henry Tarica in honor of Lorraine Kushynski’s 60th birthday Laura & Michael TomellosoKristen Van KouwenbergBilly Vitro

Donations to Support PWS CampSuzanne Privette in honor of Samantha Morgan (monthly donation)

PWCF wants toPWCF wants toTake You Out to the Ball Game!Take You Out to the Ball Game!

It’s time for our third annual PWCF Family Day at the Oakland Coliseum on Sunday, June 28th to watch the

Oakland A’s battle the defending AL Champion Kansas City Royals! Field level tickets only $28 per ticket, with $5 from every ticket sold benefitting PWCF. PWCF attendees sit together and enjoy a Pre‐Game visit from the Oakland A’s Mascot, Stomper!

Oakland Athletics vsOakland Athletics vs KC RoyalsKC RoyalsOakland Athletics vs. Oakland Athletics vs. KC RoyalsKC RoyalsSunday, June 28Sunday, June 28thth, 1 pm at The Oakland Coliseum, 1 pm at The Oakland Coliseum

Family Fun Day with the Oakland A’s Mail Order Form with payment to PWCF at 514 N. Prospect Avenue, Suite 110‐LL, Redondo Beach, CA 90277

Name _________________________________________________________ Email______________________________________________________ Telephone________________________

Shipping Address City State ZipShipping Address _____________________________________________________ City __________________________________________________ State________ Zip__________________

Please send me __________ tickets at $28/ticket. I have enclosed my check made payable to “PWCF” Please charge $___________ to my Visa MasterCard Amer Express

Name as it appears on card _____________________________________ Card No.__________________________________________ Expiration _____________ Security Code ___________(on back of card)

Billing Address ___________________________________________________________________________Signature ___________________________________________________________(if different from shipping address above)

Questions? Contact PWCF at [email protected] 310‐372‐5053 |800‐400‐9994 toll‐free in California

Family Fun with the Anaheim Angels! Angels v. Texas Rangers

Saturday, July 25 at 6:00 p.m. at Angels Stadium, Anaheim

Club Loge Behind Third Base $28/ticket

Post Game Fireworks!

Every ticket sold benefits PWCF

Thank you for your support!

Family Fun Day with the Anaheim Angels Ticket Order Form

Mail or Fax Order Form with payment to PWCF at 514 N. Prospect Avenue, Suite 110‐LL, Redondo Beach, CA 90277 Fax 310‐372‐4329

Name ____________________________________________ Email______________________________________________ Phone_________________ Shipping Address ____________________________________________ City ______________________________________ State______ Zip_________

Please send me __________ ckets at $28/ cket. I have enclosed my check made payable to “PWCF” Please charge $________to my credit card

Name as it appears on card ________________________ Card No.__________________________________ Expira on ______ Security Code _______ (on back of card)

Billing Address ___________________________________________________________Signature ___________________________________________ (if different from shipping address above)

Ques ons? Contact PWCF at [email protected] 310‐372‐5053 | 800‐400‐9994 toll‐free in California

Prader-Willi California

Foundation Family Fun Night

VS

Please join us as your 2014 MLS Cup Champions battle their

rivals and help raise money for a great cause.

To order your tickets please contact the Prader-Willi

California Foundation 310.372/5053 [email protected]

TICKETS ARE $29

OCTOBER 18th

AT 4:00 PM

Ticket Order FormName ___________________________________________ Email___________________________________________ Telephone______________________

Shipping Address _____________________________________________ City _________________________________________ State_______ Zip_________

Please send me __________ tickets at $29/ticket. I have enclosed my check made payable to “PWCF” Please charge $________ to my credit card

Name as it appears on card ________________________ Card No.____________________________________ Expiration _________ Security Code _______(on back of card)

Billing Address _________________________________________________________Signature __________________________________________________(if different from shipping address above)

Mail or Fax Order Form with payment to: PWCF514 N. Prospect Avenue, Suite 110‐LLRedondo Beach, CA 90277Fax 310‐372‐4329

A portion of each ticket sold benefits PWCFThank you for your support!

Questions? Contact PWCF at [email protected] 310‐372‐5053 |800‐400‐9994 toll‐free in California

Prader‐Willi California Foundation

Family Fun Night with the LA Galaxy!

pwcf news – january

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